Although aHUS has genetic causes, in the majority of cases it is found that the patient is the only one in the family with the genetic susceptibility for aHUS. That…
Questions about hormones and aHUS in the RDD2022 video. It is a feature of aHUS that it becomes more common in females after puberty and during pregnancy. Both puberty and…
Remission from aHUS is different from having been cured because there is still an uncertainty that aHUS can return. If that happens it is called a relapse. For a relapse…
What are patient reported outcomes (PROS)? The aHUS Alliance Global Action team look at PROs and their importance in the aHUS space.
Who, or what, are atypical HUS PROs: are these people, concepts, or initiatives? In medical terminology PRO stands for ‘Patient Reported Outcomes’ and refers to comments made directly and in…
Eculizumab was approved by the US Food and Drugs Administration for PNH for 15 years ago on 16 March. This September coming, it will be 11 years since the FDA…
Let us kick off the responses to the RDD2022 Video with a couple of questions about the characteristics of aHUS patients. I may have written in the past that if…
When Jeff, the producer of these awareness day videos, suggested that "questions" should be the theme of this years' RDD Video I was surprised. Surprised because it had been five…